It is important to be an advocate and to ask questions on behalf of your loved one. I was unable to function well enough to do so. It haunts me to this day. I was unable to get to speak with the doctor, who I wasn’t sure really knew or understood my father and his care. There was no treatment plan I could perceive. For someone in palliative care, there is a pattern of eventual physical and biological deterioration that is predictable. This must be anticipated, prepared for, and managed.
Dear Brian advocated so much for us. He visited the staff and spoke to the charge nurse, dietitian, and other care staff. Brian had been advocating for Dad’s food preferences. Tania called us from the LTC home that day. I was glad I was there to take the call. I could be replaced at school, but I was Dad’s only daughter and legal advocate nearby. Dad had crawled out of bed and fallen onto his knees. It was their responsibility, according to the Long-Term Care Act, to inform us. I thanked them. They assured us he was fine.
Dad was unable to understand the function of the call help button and would not wait for help. He often had to urinate every fifteen minutes or so. Long-term care was not staffed to allow for a senior to have such a frequent toileting routine. But it is demeaning to lose control of one’s bodily functions. There is a huge struggle to hurriedly get up out of bed and go to the toilet. It was a horrible situation. I still have no answers to this issue, with Ontario government standards limited to three hours’ care per resident per day.
No amount of discussion with the nurses would increase his pain medications to an acceptable level. I kept asking for more pain relief, but I truly did not know what was indicated, still had not spoken to the physician, and was getting tired of fighting.
Since his agitation was so extreme, they had put him on a drug to calm him. I think they said it was Respiridol, but it was intended to take away his pain. He chewed the tablets. I did not know what the drug was made of, nor what it was for. I had not been told what drugs he was on, nor given any indication of his pharmacological treatments. On the web it said this drug is contraindicated for those with dementia. There were risks involved, but it calmed him and I ignored this issue. My brain was full and I had to choose my battles. We were not informed of its intended or regular use. As alternate decision-maker, I would have liked to sit down for a talk with the attending physician, but that was not to be. I later filed a complaint, which I hope made a difference to other residents.